The Lancet publish an article co-authored by AMMF’s CEO for World CCA Day 2025
For World Cholangiocarcinoma (CCA) Day on 20th February 2025, the Lancet has published an article, co-authored by AMMF’s Founder and CEO Helen Morement, titled “Understanding Cholangiocarcinoma – perspectives from three European advocacy groups”.
The article, which was also co-authored by Elisabeth Baucells of Asociación de Tumores de Vías Biliares (ATUVIBI) from Spain and Paulo Leonardi of Associazione Pazienti con Colangiocarcinoma (APiC) from Italy, summarises the current situation for people diagnosed with CCA in Europe including the dismal 5-year survival rate, geographic disparities and the need to shorten approval times for innovative new treatments.
Photo courtesy of Marcos Bevilacqua Photography
The writers also highlight the important role of patient organisations in offering community support, accurate information and advocacy. They call for improved access to treatments for CCA and provide a list of 10 recommendations, adapted from the British Society of Gastroenterology (BSG) Guidelines for the Diagnosis and Management of Cholangiocarcinoma:
- At the earliest opportunity, each CCA patient should have their case reviewed by a specialist Multidisciplinary Team (MDT) with knowledge and expertise in CCA.
- Develop standardized screening protocols and increase awareness among general practitioners to reduce diagnostic delays.
- Molecular profiling should be conducted at the earliest opportunity for all patients diagnosed with CCA.
- All patients with incurable CCA should have access to a comprehensive palliative care assessment to evaluate their holistic care needs.
- Investment in clinical trials is critical to evaluate the pharmacological management of symptoms and the effectiveness of different models of care for CCA patients.
- All patients diagnosed with CCA should have access to a hepatobiliary cancer nurse specialist.
- Ensure all patients have access to dietitians and tailored exercise programs to improve physical well-being.
- Incorporate psycho-oncology services, counselling, and peer support groups into standard care plans.
- Timely access to high-quality information should be guaranteed for all CCA patients.
- Patients should have the opportunity to seek a second specialist clinical opinion to gain reassurance about their diagnosis or treatment options.
You can read the full Lancet article at https://www.sciencedirect.com/science/article/pii/S2666776225000316
